Macie's Story Charity

Offering advice, support and funding to children with gastroentrology conditions

Macie was born on the 09/04/2013, 4 weeks early at RVI Newcastle Upon Tyne.

Macie was admitted to GNCH at 6 weeks old to find out she had gut dismotility.

At 8 weeks old Macie was fitted with a central line and had to undergo further and extreme testing.

Macie was diagnosed at 6 months old with a condition called Chronic Intestinal Pseudo Obstruction Syndrome this is caused by Visceral Neuropathy. In non-medical terms it means that the nerves and muscles in Macie’s bowel do not work. The effects of this condition for Macie are life changing; she is TPN fed (Total Parenteral Nutrition) for 18-20 hours a day.

Macie had an ileostomy and colostomy bag fitted at 6 months old due to been diagnosed with Intestinal Pseudo Obstruction. Macie then suffered from server diversion colitis which resulted in Macie having a colectomy (Large Bowel) removed in 2014 which then left Macie with a ileostomy.

Macie had a gastrostomy peg fitted from 6 months old due to Intestinal Pseudo Obstruction for drainage purposes only as Macie cannot tolerate her own saliva.

Macie also suffers from Pseudo Obstruction in her bladder (Visceral neuropathy/myopathy resulting in intestinal and bladder dysmotility disorder) due to this Macie has suffered numerous UTI's since birth which has resulted in Macie having to be fitted with a super pubic catheter form December 2016. Macie has to have bladder washes/medicines and antibiotics on a daily basis into her super pubic catheter to help reduce the pain due to bladders spasms and a continuous urine infection. Macie has had a continuous urine infection since December 2016 which she now has to have a catheter bag on free drainage at all times due to the continuous infection to help prevent this infection spreading throughout her body and causing septic .

Macie also suffers from diversion colitis in her rectal stump and has to have daily medication to control this.

Macie is undergoing further tests due to other problems happening throughout Macie’s body, this includes Metabolic, immunology and genetic testing

Macie is an inspirational happy little girl who has been put through so much in and has had lots of major operations with ups and downs and has been admitted on numerous occasions to The Royal Victoria Great North Children’s hospital and Great Ormand Street Hospital London.

There is no cure for Macie at this moment in time and all we can do is to manage her condition.

Frankie

On 11th July 2016 Frankie was born - Macie's brother. He also had the same problems as Macie with not been able to tolerate his bottles. We were told that Frankie would not be the same as Macie and had to go through it all again, eventually while Macie was at clinic Cheryl (Macie and Frankies mum) explained what was happening and luckily we managed to get Frankie seen a bit quicker. Frankie has been diagnosed with gut dismotility.

Frankie had a central line fitted in November 2016 at the GNCH due to not tolerating feeds and his own saliva. Frankie was admitted to GOSH in May 2017 unfortunately Frankie became very ill and was unable to continue with all the tests. We have been informed that Frankie has presumed Intestinal Pseudo Obstruction.

Frankie will be returning to GOSH for the rest of his tests later on this year.

Update 2016-2017

Macie had to have an abdominal scan which showed Macie to have over 20 Gaul stones and have to have her Gaul bladder removed. Macie also started with UTI (urine infection) again after been on Fosfomycins for three year which she then became immune to. With Macie not been able to tolerate oral medication it was difficult to find another alternative profolaxes medication for Macies UTI. Macie became very unwell on more than one occasion to the point of becoming septic due to the infection spreading throughout her body. When Macie was unwell her blood started to clot or it went to thin which is life threatening, she then had to have vitamin K to correct her blood. Macie was deteriating so the GNCH contacted Great Ormand Street hospital for further advice which resulted in Macie attending a day clinic appointment in October 2016 which then resulted in Macie been fitted with a Super Pubic Catheter in November 2016 this was to help control UTI as there was no other option left of IV medication. Since the Super Pubic Catheter was fitted Macie adjusted well to using it as it stopped intermitted catheterisation but unfortunately this has not helped the UTI which she still has. Since December 2016 up to date Macie has had a constant UTI which has resulted in Macie being on free drainage to try to stop her from going septic. With Macie having a constant UTI in her bladder Macie is deteriating in the sense that she has become partially incontinent and is back in nappies she also gets very tired and drained easily which means she has to use a push chair again.